It’s not easy to watch certain movies or read certain books, ever since Alex came along. I do like to keep up with how people with developmental disabilities are being portrayed, so I make it my business to watch movies like “Pumpkin” “Rain Man” and keep up with books like Mark Haddon’s “The Curious Incident of the Dog in the Night-Time.”

But then I come across something like the following in one of Jodi Picoult’s novels ripped from a newspaper’s front page. In this case, a high school boy who’s been bullied since kindergarten is in prison awaiting trial after shooting ten of his classmates.

Drawing/photo by Fated to Pretend (flickr.com)

“Hey, Houghton,” a correctional officer said, “we got a present for you.”

Standing behind him was a kid not much older than Peter. He was rocking back and forth on the balls of his feet and he had snot running down his nose. The officer led him into the cell. “Make sure you share your cake,” the officer said.

Peter sat down on the lower bunk, just to let this kid know exactly who was in charge. The boy stood with his arms crossed tight around the blanket he’d been given, staring down at the ground. He reached up and pushed his glasses up his nose, and that’s when Peter realized there was something, well, wrong with him. He had that glassy-eyed, gum-lipped look of a special-needs kid.

Peter realized why they’d stuck the kid in his cell instead of anyone else’s: they figured Peter would be least likely to fuck with him.

He felt his hands ball into fists. “Hey, you,” Peter said.
The boy swiveled his head toward Peter. “I have a dog,” he said. “Do you have a dog?”
Peter pictured the correctional officers watching this comedy through their little video hookups, expecting Peter to put up with this shit.

Expecting something of him, period.

He reached forward and plucked the glasses off the kid’s nose. They were coke-bottle-thick, with black plastic frames. The boy started to shriek, grabbing at his own face. His scream sounded like an air horn.

Peter put the glasses down on the floor and stomped on them, but in his rubber flip-flops that didn’t do much damage. So he picked them up and smashed them into the bars of the cell until the glass shattered.

From “Nineteen Minutes,” by Jodi Picoult.

Just what is this boy doing here, in this 455-page book? We never see him again. I guess I found it an offensive portrait because it’s so sketchy and so gratuitous. He has two lines, and they make him sound as if he’s about four years old. In which case, would he really be in a maximum security prison, or would he have been remanded to a psychiatric facility? And just what did he do, this boy who can’t wipe his nose, who rocks back and forth and who cares about dogs? What was his crime, other than being a boy with a developmental disability standing conveniently around when Picoult needed such a character to illustrate a sea change her main character is undergoing. He’s cracking under pressure; his cruelty to this boy is out of character.

A friend of mine who studies literary theory points out that the boy is an object to the guards (”We have a present for you”), but I think unwittingly Picoult also objectifies the boy. It’s remarkable in that she seems to reach for nuanced characterizations. “Power relations. See Michel Foucoult,” my friend said. I’m drawing the line here, at least for now. It just struck a raw nerve, harsher than “Of Mice and Men” and as manipulative as “I Am Sam.”

New Jersey legislators are proposing a bill that would make it mandatory for insurance companies to cover treatments for individuals with autism. New York has already proposed reforms that would require private health insurance companies to pay for screening, diagnosis, testing and treatment, up to $36,000 a year. Connecticut has already passed legislation.

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Photo courtesy of jimbowen030 (flickr.com)

NPR just ran an interview with Karl Taro Greenfeld that discusses his new book, “Boy Alone: A Brother’s Memoir.” Of particular interest to me are the comments that are posted. Most are supportive; several are sharply critical of Greenfeld for what they see as his selfishness and lack of empathy. I can’t help thinking what Ned might say if he writes a memoir one day. Will he say with resentment that his childhood was absorbed by a family that revolved only around Alex?

I found out about the interview (and book) from an email sent by someone at AHRC, the agency that deals out many services to Alex. The woman who runs their sib shops, which Ned attends (and seems to really like going to). I can’t say definitely this will be enough for Ned, but it’s a start. I’m glad they exist; I’m glad they exist for Ned. I think Karl Greenfeld’s life must have been unimaginably difficult, and I think he has written a brave, unflinching memoir that will be difficult for me to read. But it is now on my list.

Next week Jeff and I are planning to catch a few movies at the Sprout Film Festival, an annual showing of movies portraying people with developmental disabilities. “People with developmental disabilities as subjects and performers remain marginalized in film and television,” the organizers believe. “This festival aims to raise their profile by showcasing works related to this population.”

Last year I gave a talk about portrayals of people with developmental disabilities in mainstream Hollywood movies (”Rain Man,” “Pumpkin,” “What’s Eating Gilbert Grape?,” “I am Sam” — I have a very long list) and how they mostly don’t get it. One movie I haven’t seen but which I think is smart and sensitive  is being shown at Sprout this year, which is unusual since they mostly show documentaries or feature films made by people with disabilities.

“The Eighth Day” stars Pascal Duquenne, a Belgian actor with Down Syndrome.

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Through Chun Wong I found out that AMC has paired with Autism Society of America to present monthly viewings of movies for families with special needs kids. I love this idea. We’ve taken Alex to a couple of movies (not his favorite form of entertainment since theyrequire a) sitting still and b) enjoying something new) and it was sort of OK. His teacher has been more successful mostly because Alex doesn’t put on the same show for her benefit that he puts on for us.

In addition to the $6 ticket price the movies are usually at 10 in the morning, a perfect time to enjoy a children’s movie and not spend your whole day doing it. Besides, I don’t care if it’s going to be stupid. I want to see Night at the Museum 2.

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Every now and then I dream Alex can talk. Really talk. We have a conversation; he tells me how he’s feeling. I never really remember what we talk about. Only that we talk. And that in the dream I’m aware of a feeling of a deep relief. Thank god. That long period of not communicating is over.

Apparently I’m not the only one who has that dream. These are the comments of other parents on Cafemom who also have it. I feel bad complaining sometimes, because another thread talked about what you wished your child could say. Many moms longed to hear “I love you” and “Mommy” and “Mama.” I’ve heard all those, and they were thrilling. I just wish Alex could tell me what he’s thinking now and then.

Image: Amazon

“Retarded” as been used three times in the past six months aloud in my office: “That’s retarded!” “He’s so retarded!” “I’m not a retard!” Each time, the word flew right out of a cubicle, clear and loud, for all to hear.

Anyone older than 5 could imagine many words that would cause quite a stir – not to mention a lawsuit – if they flew with such abandon right out of cubicles. “Retarded” and “retard” don’t seem to be among those words.

I Googled the word and turned up some 18 million hits (down from more than 19.1 million when I Googled it two years ago, so that’s progress). Hits have included a band with the name, “retarded animal babies,” and “movie criticism for the retarded”, which on Google scored right ahead of “Declaration on the Rights of Mentally Retarded Persons”, so that’s progress.

Jill and I often think of how Alex looks to other people: on the street, in restaurants, at the airport and on the bus and the subway. Many people still look at Alex. Sometimes Alex notices them, sometimes not. Sometimes he answers them in a somewhat appropriate way if they ask him a question; sometimes not. “That’s the way they communicate,” one woman said to me once in a McDonalds, meaning autistic people, about whom she seemed to know something; I somehow thought it a kind observation, though I was just guessing.

Alex is a nice-looking kid. Dark hair and eyes. A killer glance when he makes eye contact. Slim, downright skinny; it’d be hard for most people older than 5 to see him as any kind of threat.

Not like the time an “older” guy from a special-needs high school in Ned’s school building got into Ned’s first-grade classroom. “He ran in and sat on the teacher’s chair,” Ned recalls, adding that he himself hid under his desk until somebody came and fetched the young man. A few days after that incident, when Jill picked Ned up from school, Ned’s teacher said Ned was great when the guy came in, telling her not to be scared and that the guy was just “sensitive, like my brother.” I like that somebody else had to tell me this about Ned, and I especially like that S word.

The New York Times reported yesterday that marketers are showing increasing support for the disabled. Special Olympics is also taking pledges from visitors against hurtful language (“Spread the Word to End the Word”).

You know what I wish? I wish things were a little easier. I wish there were more tax exemptions and credits for special therapies and childcare. Our childcare costs are lower than they used to be, thanks to respite through our Medicaid Waiver, but they’re still higher than those for families with typically developing kids. Alex is almost 11 and can’t be left alone. Ever.

I wish those caring for a family member with an atypical situation were entitled to more paid leave. In a country where people without kids bitch about parental leave and co-workers who take time off to care for sick kids, it’s not going to happen. But I can still dream, can’t I?

When it comes to jury duty, I wish exemptions were easier to get. Reader Bonnie Sayers (see first comment) wrote about her experiences with her local court system in California, which seemed needlessly harsh to me. I am indeed lucky to live in New York, where I’ve gotten about a decade’s worth of deferrals because I’m the sole caretaker of school-age kids.

We all owe it to our community to participate, but the fact is, we can’t all do it all the time. And the system isn’t going to collapse just because one segment of the population cannot sit on a jury for the 10- or 15-year period when their kids require a level of care that’s beyond what most parents of typically developing children provide. I expect to serve on a jury again one day - when Alex has more support and programming for a longer day.

Kathye Schattner, a Kentucky resident, started a website detailing her attempts to get her state legislature to enact more family-friendly jury policies. Check out examples of families who have been affected by harsh rulings - including families who have children with autism.

Brain,Child Magazine ran a piece a few years ago by a Colorado lawyer, Kathy Plonsky, who thoughtfully defended these policies in a piece entitled A Jury of Her Peers. I remember reading this piece and thinking it was well-reasoned, but since then I’ve come to feel it’s an overly literal interpretation of the law. I don’t see why the incident in Plonsky’s own life that infused her with a new empathy for the defendant couldn’t as easily have been recalled five, ten or even 20 years later, rather than a few days. The experience of parenthood is not fleeting - the memories of outstanding parent-child events are usually seared into your brain, not forgotten like a mildly entertaining movie.

Yes, we’re entitled to a jury of our peers, but doesn’t that just mean twelve ordinary commoners instead of one king presiding over your life? Jeff served on a jury, and if you’re looking for a precise peer of an Hispanic drug dealer, he’s probably not the best match.

Our situation is not that different from anyone caring for a family member who has unusual needs - Alzheimer’s, autism, a brand-new baby. They all require an extreme level of care. But some of us will be asked to provide this care for a much longer amount of time.

Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

If Charlie’d had a younger sibling, would we have decided to participate in studies like this one at the University of Washington, as noted in the Seattle Post-Intelligencer:

Autism researchers at the University of Washington are seeking parents who will allow them to do brain scans of their infants.

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The UW scientists are looking for 84 six-month-old infants from California, Oregon, Washington, Montana, Idaho, Nevada and Alaska who have an older sibling who has been diagnosed with autism. They also need 34 infants with typically developing older brothers or sisters.

Each child will be scanned three times over two years.

Certainly I would have considered having a sibling of Charlie’s participate in such a study—-and then, after reading (wading) through so many studies, so much research, about or said to be related to autism over the years—-sometimes one wonders a bit about where it’s all going.

Some research from June: Are low birth weights and preterm births risk factors for autism? Does autism present diffrently in girls and women?

June was, too, the month that a certain female celebrity led, along with some others, a rally about “vaccine safety” in Washington, D.C.. Questions swirled about the extent to which said celebrity’s own child is recovered or not, or undiagnosed—-and perhaps this sort of discussion is beside the point, especially if you consider the notion of neurodiversity, according to which, just as we’ve come to understand that there’s diversity in terms of race, ethnicity, and gender, so we’re also starting to learn to think of diversity in terms of different ways of thinking, of different minds.

Autistic Self-Advocacy Network President Ari Ne’eman and I were interviewed for a Good Morning America segment on neurodiversity in early June—-a show which provoked quite a bit of discussion.

An autistic child was removed from an American Eagle flight in late June and, in July, a family with four children, one with autism and one with cerebral palsy, was told they were “too disruptive” to continue on a connecting flight from Phoenix to Seattle.

The NIMH put a study on chelation on hold, leading to considerations of whether the study should just be done to prove the efficacy, or lack thereof, of this alternative, and dangerous, treatment for autism. —–Another new diagnostic technique looked at whether one looks at the mouth or eyes of a person’s face. —- And findings about the rates of autism in Somali children in Minneapolis led to a lot of speculation and fears of some external “thing” causing such an increase. — Talk show host Micahel Savage launched a thousandfold of ire towards him for some, indeed, savage comments about autistic children and their parents.

Bringing the focus back to what we can do for autistic individuals in the here and now, it was reported that restraints are being used more and more in public schools

With the advent of summer, Jim and Charlie began another summer of bike rides, with Charlie more and more taking the lead and Jim devising newer, and longer courses. And July and the 4th of the month prompted more thoughts on the meaning of independence and also about why I don’t hold Charlie’s hand anymore (well, most of the time).

And please remember, with flowers and swings, Evan Kamida.

Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

Change.org has been running a competition to vote on the top Ideas for Change in America. The competition ends on December 31st—-yes, that’s Wednesday—and here are three ideas that I think can clearly make a difference in the lives of autistic individuals:

Fully Fund Medicaid Waivers for the Developmentally Disabled

Replace No Child Left Behind With a Strong Education Policy

Independence and Services for Disabilities and Autism

The top 10 ideas will be announced in January.

(For discussion about the idea about the “Autism Reform Act,” see this post on autism legislation.)

February brought on winter doldrums and also a topic that came to dominate 2008, the presidential election, starting with a post on the candidates’ views on autism prior to Super Tuesday on February 5th.

There was more evidence refuting the vaccine-autism link—and specifically the MMR vaccine—from the Archives of Disease in Childhood. We need to get the word out about the evidence that there is no link, as it’s been reported that more parents are choosing not to vaccinate their children, because they fear that vaccines or something in vaccines might cause autism. And measles cases have been on the rise in 2008, with 5 cases reported in San Diego (and soon 11 cases) in mid-February.

In the UK, the National Autistic Society began another phase of its Think Differently about autism campaign, with a focus on autistic adults and the message “I Exist.” The need for this campaign was more than made apparent on hearing comments about autistic children as “retards” made by Adam Jasinski, a contestant on CBS’ Big Brother TV show.

After an article in Wired magazine featuring Amanda Baggs and Michelle Dawson, questions about autism as disease/disability/difference led to discussion (of a rather heated nature, at times).

And then, on February 28th, then-presidential-candidates Senator John McCain linked the rise in autism cases to mercury in vaccines…………………